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Updated Duchenne Guide for Families

The new resource will be released on World Duchenne Awareness Day, September 7, 2018

Duchenne Muscular Dystrophy (Duchenne) is a rare genetic (inherited) disease defined by muscle weakness that gets progressively worse over time and ultimately affects the heart and lungs. About 1 in every 5,000 newborn males is affected with Duchenne. People born with Duchenne will require care from many medical providers throughout their lives.

In line with the three articles about care considerations for DMD recently published in Lancet Neurology1-3, a new Duchenne Guide for Families has been developed and will be launched online on World Duchenne Awareness Day, September 7, 2018.

The development of the updated care considerations was funded by the U.S. Center for Disease Control. These updates offer the latest clinical considerations to improve care, services, and quality of life for people living with Duchenne, raise the standards of care for Duchenne and will assist clinicians in making the best possible recommendations for these patients.

Thanks to the collaboration of four not-for-profit organizations — the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the World Duchenne Organisation UPPMD — a thoroughly updated and re-drafted Guide for Families was also developed. This guide will give patients, families and caregivers access to the information necessary to enable them to work with their health care and support providers in ensuring optimal care.

Over the coming months, the Duchenne Guide for Families will be translated and published online on the TREAT-NMD website in many languages, with the help of the global Duchenne community.

There is a compelling need to ensure that wherever they are in the world, individuals affected by this condition can benefit from standards of care that are informed by the best practices of the best clinicians worldwide. It is equally important that the information available to families is easy to understand contemporary and based upon the latest research. This is why the updated guide for families is so important.

In an effort to make the updated Care Considerations even more accessible and to provide a tool that young people living with Duchenne can use in managing their own care, a series of 19 educational videos be released on the same day.

For more information contact:

Cathy Turner, TREAT-NMD (catherine.turner@ncl.ac.uk)
Elizabeth Vroom, World Duchenne Organisation, UPPMD (evroom@euronet.nl)
Nancy Intrator, Muscular Dystrophy Association (nintrator@mdausa.org)
Will Nolan, Parent Project Muscular Dystrophy (PPMD) (will@parentprojectmd.org)

Duchenne Guide for Families: http://parentprojectmd.org/careguidelines and https://www.mda.org/sites/default/files/MDA-DMD-family-guide_18-0410.pdf

World Duchenne Organization UPPMD: www.worldduchenne.org
TREAT-NMD: www.treat-nmd.eu
PPMD: www.parentprojectmd.org
MDA: www.mda.org
Educational videos: www.dmd-care.org

References:

1. Lancet Neurol. 2018 Mar;17(3):251-267. doi: 10.1016/S1474-4422(18)30024-3
2. Lancet Neurol. 2018 Apr;17(4):347-361. doi: 10.1016/S1474-4422(18)30025-5
3. Lancet Neurol. 2018 May;17(5):445-455. doi: 10.1016/S1474-4422(18)30026-7